We are out...

We are out and getting settled in our room. I am so glad we stayed local and she did fine. The doctor chose just to use gas so she never had to stop breathing. She was always breathing on her own. I will post again and explain what happen. Thank you for prayers.

Prayers for Bella please....

Very soon they will be taking Annabel back to surgery to put a femoral central line. Please pray that I have made the right decision to leave her locally. We know both doctors very well. It is Annabel's airway that always has us travel to Houston. I will try to update after she is admitted and comfortable. I am begging for the Great Physician to be with the doctors and Annabel in surgery.

The great outdoors....

So today our weather was great. Nice enough to bring Annabel outside. Rebekah sits on the patio and plays/sings with Annabel. Even though Annabel isn't us to being in her stander/gait trainer for therapy, she loved hanging in the gait trainer being upright outside. Her brother, Derek came by to visit with her. Annabel has always loved to hold your face with both hands, but lately she stare intently at our mouths. She wants to speak so bad. She moves her tongue and her lips and some of the time she utters a sound. We rejoice and she loves it. This has become her favorite thing to do.
She is still off the TPN! This is good but she is uncomfortable, especially in the evenings on her feeds. She is becoming very distended. Prior to coming into the hospital she was on 4 daily feeds of breastmilk alone. In the hospital they wanted her on pediatric compleat alone and I told them I would only agree to 1/2 breastmilk and 1/2 or what they wanted. So that is what we are doing. She had been on pediatric compleat for 5 months prior to going on TPN and was miserable. We are running about 1 feed per day behind and it is crucial she get all the feeds in. This was the minimum amount she must take in without getting IV fluids. So each day we push. It is hard when she screams and is so uncomfortable. Last night we had to hold the feeds due to the yellow bile when we vented her. We see GI on Tuesday and I am glad it is our regular GI. In the hospital you have to see whoever is on service for two weeks straight.
She is off the vancamycin for the UTI and now we are finishing out the Fluconasol over the next four days. We are glad to be home. Depending on how she feels we may allow her to return to school for some hours this week.